F made it to the Capitol

I'm so proud of F! He was determined to go to the Capitol today to be the face of someone who benefits from home care nursing. He took his new Maestro with him. We left the house at noon and did not return until almost 3:30. Which wouldn't have been possible without the amazing Farrell valve bag to help with his gas problems! (thank you, Caroline!)

We arrived downtown and drove, and drove, in circles looking for an accessible place to park. F has a Dodge Grand Caravan with a Braun Entervan lift. It requires a lot of space to accommodate F and the ramp (probably 8 feet at least). His wheelchair has such a long base. I kid you not, there is hardly any accessible parking downtown.The handicap spaces that were curbside had to be chosen by a moron when they chose the spaces to be designated for handicap parking and then painted. They were placed in front of trees. Seriously, trees! So even if I could park in the space, I'm not quite sure I wouldn't hit the tree with the lift. If I had room I'd then have to navigate F through dirt to the edge of the sidewalk. The other parking spaces near the handicap ones actually had sidewalk near them (Really? What were they thinking?). I finally found a space along another street that was on the end of the row. It wasn't handicap, but it was close to a parking lot and lined off so I could get F out. Then I noticed it was metered. I forgot my meter money! I had one quarter that gives me 12 minutes. I was hoping handicap plates wouldn't require meter money. I wasn't about to look for ANOTHER space!

We unloaded. hooked up F's Maestro. We called Andrew, the GM for our nursing agency. We headed toward the Capitol. We finally met up with Drew (Andrew) near the Capitol entrance. He explained everything to F and I about the interviews. He was also very thankful that we came. F was the only patient to attend on the agency's behalf. We went through security, which is always interesting with F due to the equipment. Security like all bags removed from the wheelchairs, but I'm not about to disconnect F's feeding pump and Farrell bag or his other supply bag.  It's time consuming.  The security officers were great about it. I'll say this Capitol security is much more kind to the disabled than the security provided by the local Sheriff's department at Family court (rude, unkind, and unprofessional). We head to our destination.

This is outside Linda Halderman's office

First stop was Assemblymember, Linda Halderman M.D.'s office. We met up with other  representatives from other nursing agencies from surrounding cities. They too were here on behalf of their patients. F didn't get to meet the assembly member, only her staff member. I asked what F wanted me to tell them on his behalf. His message was about how much he appreciates having a nurse. How he gets a break from his parents as caregivers. He is more independent with his nurse than with us. He also wanted them to know his nurse has improved the quality of his life with the knowledge she has shared with him. He wishes that she could be paid a more competitive wage for the work she does. He also felt he would have better access to nurses if the wage were higher.

We left and went to another assemblymember's office. Met up with another agency employee who did his initial intake many years before. We again met with the assembly member's staff member. I helped F deliver his message. Then we packed up and headed home.
I couldn't be more proud of him. He was very tired from all the commotion and trying to use his communication device in the process. His select switch was a bit out of range and I forgot the tool to adjust it for him. He was tried and tried to select appropriate comments for the situation. He did really well considering its really his first day out with the device and I see it's potential. He didn't realize that he would get so tired moving around and trying to communicate. He is accustomed to just sitting at home practicing the scanning...not using it in real life situations.  That brings another dimension to the device and a whole new level of fatigue.

F and I appreciated all the knowledge he shared with us about the waiver that funds his nursing.  F is a part of what is called the EPSDT waiver.  The funding for his nursing comes from Med-Cal.  This program was set to have reimbursement rates cut last year that would have rolled back the reimbursement rate to 1993 rates.  The rate has been the same since 2000.  This portion of Medi-cal services only accounts for 1, yes ONE, percent of all Medi-cal funding yet it SAVES our state a lot of money.  If memory serves me correctly a facility for F could cost up to $5,000 per day.  This program $500 a day.  I would like to add that although this program is funded by Medi-cal, we have private health insurance and they do not provide this level of care for F.

Drew walked us back to the car.  He wanted to make sure we didn't get a ticket... and we didn't!  So metered and handicap plates are covered!  Whew!  Thank you to Drew for the invite.

F and I appreciated the invite to Capitol.  F would LOVE to do it again. I told him next time I'll make him a sign and bring it so that while he's standing (or sitting) in the halls he can advertise to the politicians and their staff walking the halls.  This day made me realize why he wanted to retain his right to vote under his conservatorship.  There is so much more to him than meets the eye.